American Society of Human Genetics announces 2019 Essay Contest

    The American Society of Human Genetics announced the question for the 2019 Essay Contest. The annual contest is open to students from around the world in grades 9 – 12. The winning submission will be awarded $1,000 and $1,000 in lab equipment for the student’s science teacher. There are also other prizes. The contest is one of many activities held to celebrate DNA Day, April 25th, 2019. The day honors the completion of the Human Geenome Project in April, 2003 and the discovery of the...

Steve Shank shares his HPS story with KARE 11 News

Steve Shank, an HPSer who received a double lung transplant two years ago, shared his story with Minnesota KARE 11 News in July. Steve had hoped to participate as a bicyclist in the American Transplant Games, but sadly had to stay home after being hospitalized with an infection. That didn’t stop him, however, from using his plans for the games as a way to share his story about HPS and about transplantation and organ donation. To watch the interview, go to:...

Caren Shank joins with doctors at the University of Iowa to present about HPS

Caren Shank returned to Iowa this past June to join with her husband’s ophthalmologists and give a presentation about Hermansky-Pudlak Syndrome at the 2018 Iowa Eye Annual Meeting. The presentation was called “The Importance of Gene Testing in Albinism – It Is Not Just Academic.” Caren and her husband Steve relocated to Minnesota two years ago after Steve was diagnosed with HPS. He received a double lung transplant at the Mayo Clinic soon thereafter. Caren presented with Dr. Arlene Drack and...

Join the HPS Network at Outback Steakhouse to eat for the cure

Enjoy a juicy steak and help us fund the cure, Sept. 25 between 4:00 pm to 9:00 pm at the Outback Steakhouse, 901 Route 73 South in Marlton, NJ. Tell the server you’re there to support the HPS Network, and a portion of your bill will benefit us. Enjoy some steak and lobster, or some Queensland chicken and shrimp pasta. Or, maybe a salted caramel cookie skillet for dessert....

HPS Multidisciplinary Clinic to be held in Mayaguez

A multi-disciplinary clinic for anyone with HPS will be held Oct. 20 at Mayaguez Medical Center in Puerto Rico. The clinic is free, and is a chance for children and adults with HPS to consult with a variety of physicians knowledgeable about Hermansky-Pudlak Syndrome. There are a limited number of appointments available, so don’t wait too long to make yours. Limited transportation assistance is available. Physician experts will include: Pulmonary – Dr. Monia Egozcue, Dr. Rosa Roman and Dr....

HPS moms to gather for third annual Mothers’ Workshop at the HPS Network Conference

  Mothers of children with HPS will gather for their third annual workshop Friday, March 8, 2019 at the 26th Annual HPS Network Conference. The HPS Network Conference will be held March 8 – 10, 2019 at the Long Island Marriott in Uniondale, NY. The Mother’s Workshop will begin at noon and run until 6:00 pm. Moms will have a chance to network with one another, talk about the importance of self care and share ways to cope with the many issues surrounding raising a child with HPS. “We have to...

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